Nearly 5 years ago we brought our sweet little Courtney home from the hospital. I was a ball of emotions that day. The books don’t prepare you for the emotional roller coaster you go through at the beginning. I kept breaking into tears. I vividly remember my older sister calling me that first night home and right after she asked how I was doing I became an uncontrollable sobbing mess. Some how in between the sobs I was able to tell her that The hospital sends you home with this tiny human being trusting you will know what to do. I suddenly had no clue. My sister , mother of 5 boys, reassured me by telling me she had the same emotions bringing home her boys. I decided to trust her in knowing that I had this.

Nearly 5 years later, as I put Courtney, my non-verbal 4 year old with autism, on the bus for her last day of summer school and then watch my little 2 year old miracle child sit on the bottom step putting her own shoes on, I broke into tears again. (For the trillionth time since that night when I first brought her home.)

Ok, Cheri, you were right. I’ve got this. I’ve got this motherhood thing down. Don’t worry, I know the ups and downs of parenting has just begun, but I’ve got this.

A little shout out to both of my sweethearts…Courtney, I’m so proud of you for handling summer school like a champ. I don’t give you a break. Most kids at your age get to enjoy a couple of months of summer. You get 1 month and even then, half of that month will be spent in hours upon hours of play therapy. Alyssa, I’m in awe of your strong personality every day. You are such an awesome little sister to Courtney and a joy to be with all day (even during your tantrums). I’m so proud of how you are handling your health issues as we figure out your food allergies. Girls…we’ve got this!

I look at pictures like these and I can’t help but think of how far the two of them have come the past 3 years. Let me rewind three years…

Three summers ago Courtney was 22 months old. She had zero words (though if you were really lucky, you would hear one), not responding to her name, not interacting with other kids and pretty much in her own world. Happy and healthy and meeting all milestones except language ones.

Watching Courtney regress wasn’t the hard part. The hard part was convincing Joe that something was up with his little girl. At this point I was just trying to convince him she needed speech therapy. Three summers ago there were so many arguments and so many tears over it. At this point I suspected autism and I did throw that label out there in discussions but I had to back off and just discuss her language delays. It made me so mad that he didn’t trust my opinion being that I had spent so many years teaching children with autism.

He finally agreed to looking into private speech therapy. I decided at this stage that o really needed to be careful about using the word autism around Joe. He wasn’t ready. I remember telling her speech/language therapist that I suspected Courtney had autism but not to use the word around her dad.

A year later, by the time we were about to get her evaluated through the school district and by a developmental pediatrician he was a little more ready to hear the diagnosis of autism. But he still felt strongly that all it was going to take was a year in preschool and she was going to be talking up a storm and acting more “normal”. Though I would get frustrated with his lack of true understanding of Courtney and her development, I had a better understanding that joe needed more time to come to terms with it.

It took time but he’s there. He now is just as much of an advocate for his little girl as I am. He gets her. He understands her needs and why she has these needs. Thanks to Alyssa being such a mommy’s girl and having separation anxiety, joe and Courtney have formed a special bond. I love capturing moments between the two of them. The moments where you can see that she loves her daddy so much. I’m so proud of both of them!

What does S.I.B. stand for? Self injurious behavior. Meaning injurious behaviors that you do to yourself such as biting yourself. Courtney has S.I.B’s and they come in the form of biting her hands and arms. Mostly she does it when frustrated and or to escape something that is too hard. Or even to escape something she doesn’t want to do. You may have noticed in some pictures that Courtney wears a red object on her shirt. That is a chewy and it’s there for her to chew on in hopes it decreases the biting. Overall it does. She chews on that thing all the time. Wish her arm wasn’t her go to but glad we have something to help decrease it.

So things like changes in routines, over stimulation, new places can set her off and cause this behavior to increase. That includes something like a 4day vacation at a fancy hotel with fancy dinners. So needless to say, as much as we have had a fantastic time on our trip to Mackinac Island, the picture I’ve been posting have hid some of the frustrations. Here’s a picture that shows the behind the scenes of taking a child with autism out of their comfort zone…

Those are bruises on Courtney’s arm from her biting herself. Scares me because someone could mistake those as my hand marks. Breaks my heart that she bites herself hard enough to leave bruises. These weren’t just from our vacation. We’ve seen an increase since her summer break has started. It took my friend to remind me that summer break brings lots of changes. Change in schedule, change in teacher, mom and dad home…all things that can set behaviors off. The last full day of our vacation is when it was at it’s worse. She bit herself over and over again. She even tried biting joe, Alyssa and I. I said at dinner that you can almost see it in her eyes. To me, her eyes looked like she was ready to attack. There was a dark look deep in those eyes. She had hit her limit.

Some how we made it through the dinner. After dinner she went after Alyssa again and that’s when I decided we needed to separate them for a bit. Courtney and I went back to our room where I let her just relax and play while Joe took Alyssa to the porch of the hotel where she got to charm all the adults in the hotel. Courtney relaxed almost immediately. My heart was happy again. Killed me to not spend our last few hours together as a family but knowing both girls were happy doing what they needed to do made me feel better.

“Here’s a rest stop with a big field for Courtney to run. I’ll run with her.”

5 years ago when he first took me Mackinac Island, MI I was almost 7 months pregnant with Courtney. We were on our “baby moon”. Joe talked back then how we would do this trip annually with our family just like he did growing up. He talked about how perfectly well behaved our kids would be all the time. I always chuckled knowing that no child could possibly by “perfect” 24/7.

If you haven’t read it before, you need to read “Welcome to Holland”.http://www.our-kids.org/Archives/Holland.html. It describes so perfectly how I feel about raising a child with a disability. No, this is not the journey we imagined 5 years ago but I love this journey! I’m so glad we are on this journey.

5 years ago we didn’t talk about how our long car rides are going to need to include a stop at a park and or field for Courtney to run. We didn’t talk about the big Rubbermaid container we were going to have to pack of Courtney’s food. We didn’t even consider having to bring a cooler just for 3-1/2 gallons of special milk. But life barely ever turns out as you planned, right? We may have planned for Italy 5 years ago, but our wild trip to Holland is beautiful! Even more beautiful than Italy!

Alyssa and I have a lot in common but it goes way beyond her being my mini me. Her and I are both part of the special needs sibling club. Alyssa and I both have a sibling with special needs. Being a part of the same club has helped me remember that I have to pay extra close attention to how decisions I make for Courtney may also effect Alyssa. Already, Alyssa’s life is revolves around Courtney’s therapy schedule. Not a day goes by where I don’t think about how this could effect Alyssa some day.

But it’s more than our daily schedule. My expectations of how they behave in certain situations is different. I discipline Alyssa differently then I discipline Courtney. If Alyssa could tell me, I’m guessing she would say that Courtney gets away with things. It is my job to make sure Alyssa doesn’t resent Courtney for these differences.

Monday morning was a tough one. Courtney had gone to bed late the night before so I had to wake her to get ready for school. Alyssa woke up super early so by the time Courtney woke up, Alyssa was extremely crabby and ready for a nap. By the time Courtney woke up, we had 20 minutes to get her fed and dressed before the bus came. She was very irritable and aggressive during these 20 minutes. She requested the black Ipad which Alyssa had at the moment. I nicely asked Alyssa if Courtney could use the black Ipad. Of course Alyssa replied no. Frustrated by the amount of self biting Courtney was doing, I decided to just take the Ipad from Alyssa. Rightly so, Alyssa threw a fit. This didn’t self the problem with Courtney at all because now she was upset and over stimulated by Alyssa’s crying. So…now I had two kids screaming with the bus about to show up at any minute.

We got through that insane moment. But I was uneasy about how I handled that moment the rest of the day. Joe got frustrated with Alyssa when she was throwing her tantrum. I reminded him that she had every right to throw that tantrum. I ripped the iPad out of her hand to make her sister happy. How unfair is that to a little two your old. I know, you have to pick your battles and in the end, that one moment won’t damage Alyssa. But what decision of mine will leave Alyssa resenting Courtney?

The girls and I always spend Thursday evenings at my parent’s house. My mom use to watch the girls during the day and that is not possible any more. I want them to have a good relationship with their grandma and grandpa along with my sister and her family who also live there.

As I’ve mentioned before, the evening usually consists of Alyssa playing with her cousins while Courtney plays/climbs in a different room. Now that it’s nice outside, you will also find all the kids outside but usually Courtney is still doing her own thing. They have one of those big trampolines in their back yard which Courtney LOVES to play on. This Thursday that trampoline became my favorite equipment. The trampoline brought all 4 kids together. For 20 minutes, I watched them all jumping together and having just the best time. My heart was full! Unfortunately I didn’t get a picture of the awesome moment.

I did get a few pictures of another awesome moment. Before my mom became a full time Grandma/Nanny, she taught preschoolers with autism. Her job was her life. You will never meet such a devoted teacher as her. She loved her students like they were her own. You can tell it was so hard on her to make the decision to retire even though it meant she got to watch her grandchildren. I’m pretty sure Courtney holds a special place in her Grandma’s heart because Courtney brings her two favorite things together…grandchildren and autism. If it were feasible, I’m pretty sure she would love to be her personal teacher. When we were there this Thursday, Courtney got into markers. Courtney LOVES labeling colors. My mom and her spent several minutes just labeling the colors of the markers. Pretty sure my mom was on cloud nine during this special time with Courtney.

It was such an awesome Thursday! I love that the girls enjoy our time there and that I can still make it work in our crazy schedule.

I think the thing I have the hardest time with when it comes to Courtney is her struggle with peer interactions. I think I struggle even more now with it than ever as I watch Alyssa make friends and talk about them on a daily basis. Now Alyssa’s friends are mostly her cousins and then her friend Kayla, but she asks for these friends daily. Does she ask for these friends daily because she doesn’t have anyone playing with her at home? For the most part, Alyssa and Courtney do their own thing when playing at home. Alyssa is usually making up the cutest play schemes in her kitchen or with her princesses and baby dolls while Courtney is in another room labeling colors, numbers and animals or looking through books. They do occasionally like to rough house with each other which I always enjoy watching. I do work on them playing next teach other but it’s usually short live.

I love the bond that Alyssa has with her cousins but when I watch them play together while Courtney is doing her own thing in the other room, my heart breaks. I want Courtney to have that same bond with her cousins AND her sister. I know Alyssa and Courtney have their own special bond and nothing will ever break that.

I have to laugh…at the end of last school year and the beginning of this past school year when I addressed my concerns about her placement in a blended room, I explained to her team that Courtney sometimes struggles with playing even in the same room as her sister and cousins. I will never forget the principals quick response on how magical the transformation will be after she spends some time in the blended room. She told us we will be surprised how Courtney will now want to play with other kids. Well principal, I’m still waiting! Yes, I’m fully aware that it takes time but that wasn’t the way she put it.

Our home therapy is working on Courtney playing with Alyssa. When possible, Alyssa gets to join in on the therapy session. Right now they are working on increasing the time Courtney and Alyssa will engage in parallel play, meaning the two of them sitting next to each other playing but not necessarily interacting. With time, she will get there. I know I have to patient until she does. I have to remember they do have a special bond in the mean time.

The past few weeks several have said to me in person how much they enjoy my blog. I just wanted to make sure I again say thank you. Thank you for taking the time to not only read my posts but always being willing to support my family through our journey. I have found blogging so therapeutic these past 2 years. I continue to hope that the blog not only helps spread awareness and acceptance of autism but I also hope it reaches other parents of children with autism so they know they are not alone in their journey.

So again I say, thank you!

Ok, so truth be told, I wanted Courtney to have therapeutic horse riding so I can spend time with my favorite animal. I’m taking lessons right along with them and loving every minute. Truly therapeutic for me!

Though there is another reason why I actually decided to join in on the lesson and today was the day it paid off! After a couple lessons, Ms. Christine let Courtney get on the horse with me. Folks, she rode the horse today!

Ms. Christine and her friends moved to a different ranch last week and this new home appears to be a better fit for Courtney. She seemed at ease from the get go. When given a brush, Courtney actually brushed the horse without any resistance!

I love how quickly Ms. Christine has gotten to know both girls and their needs. She has no problem handling Alyssa’s sassiness with patience and consistency while handling Courtney’s fears and sensory issues so gently and understanding. She is so encouraging with both of them throughout their session.

Alyssa showed resistance today. Though the stacks were against her. Her favorite pony, Bumble wasn’t there today so she had to work with the big horse Capone. She’s also going through a phase where she is exhibiting a HUGE phobia of bugs/flies and there were a few of those around today. So…I got to go on first and Courtney got to “help” walk Capone while I rode him. After sometime of her happily walking the horse, it was my time to just ride. It truly is just as therapeutic for me as it is for Courtney. I’m so relaxed during my session. During that time the only thing that is on my mind is that horse and how to get him to do what I want him to do. Not an ounce of stress!!!

Ms. Christine tried to convince Alyssa to get on Capone with me but she wouldn’t have it. Since she seemed to think I was ready to ride with Alyssa, I asked if we could try Courtney today even if it was putting her up with me and taking her right down. Courtney will whine if she has to do something she doesn’t like but if she is truly fearful of something, you can see her whole body tense up. She was just whining when put on the horse with me with some intermittent smiles so we decided to keep pushing. Her boots fell off when we put her on. When shoes come off so do socks. Courtney loves exploring textures through her feet so I immediately felt this could help and Ms Christine was ok with it. Whenever Courtney started to whine I had her rub her feet on Capone and it definitely helped calm her.

I was on cloud nine as I held and encouraged her through 2 laps around the arena. I was so incredibly proud! She did it! We did it! Thank you Ms. Christine and Capone for making it such a fantastic day!

Bumble, Alyssa hopes you are back soon!

This photo came up on my Facebook memories. It was from two years ago today. It was the day of Courtney’s evaluation at what’s now her preschool. Unexpectedly this picture hit me like a ton of bricks today. The emotions poured out. More so than that actual day. On that day I knew what the evaluation team was going to see and determine. I was prepared for it. In fact I needed that day because at this point there were still loved ones that I needed to convince that we were on an autism journey with Courtney. Loved ones including her dad.

As a family we have come such a long way since this day. We have learned to accept her limitations and celebrate her differences and strengths. We have learned that our Autism Journey is our normal. It may not be someone else’s normal but it’s ours and we love it. There are many days in the past two years where I was stressed, frustrated, and angry about different parts of this journey but all I needed was to see Courtney’s smile or hear her voice and those emotions disappeared. The emotion I feel the most is proud. I am so proud of our little family!